Hi all, I apologize in advance for the long post but it's relevant to find out if there's something I'm doing wrong. I feel like I'm taking crazy pills in the Twilight Zone.

I am a Canadian who grew up in the States, and returned home as an adult. So I don't know how the medical system works here and am having serious trouble navigating it. I was told as a child that I was allergic to insect stings. So I've been trying to get to an allergist for testing so I can see how worried I need to be around bees and wasps which of course are everywhere this time of year. I got tired of living in fear every time I take a walk. I'd also like to know if there are any other food allergies I'm not aware of.

I live in the Ottawa area and have been going to the ubiquitous Appletree Medical Group. They advertise everywhere that they do allergy testing. I thought, perfect, I will get it done here. So I went to the clinic back in November and asked for allergy testing for insect stings. First they told me they don't do that, then they said they do, then they said well let's start with testing for the environmental allergens and we'll go from there. So I did it and said okay, now about the insect stings... and was told well, we don't do that; we'll refer you to an allergist. But don't worry, I was told, it won't take long.

After 5+ months I still hadn't heard from the allergist, not even to set an appt date. I called for status a few times during this period but got no answers except "Dr. Kerr's office has received your referral, you just need to wait for them to call you." I waited a couple more weeks and finally started calling a bunch of times to find out what in the world was taking so long. I could only get through to the call centre, and each time they said "someone from the doctor's office will call you back in X number of hours," but they never did.

I started really wondering what was going on. Started poking around on Dr. Kerr's website and come to find out that a month prior, while I was waiting, she'd decided she was no longer taking new patients who have food or insect sting allergies! So then why was I left still waiting for her?? Why did nobody contact me to let me know? Why was it so impossible to get status on the referral? Grr.

I went back to the clinic and saw a doctor to see if he could do something because I sure wasn't getting anywhere. He looked into it and found out that my referral had been forwarded to another allergist but had been sitting in limbo with no one acting on it. He must have lit a fire under someone's rear because someone called me from the 2nd allergist's office the very next day with an appt date in 3 weeks.

So I went to see the 2nd allergist, Dr. Algom. Within 5 minutes of arriving, his receptionist informed me that he doesn't do testing for insect stings and gave me the number for a 3rd allergist who supposedly does. Well, too late to cancel now so I went through with the appt. I brought the printout of the test results from Appletree, but he didn't trust that so he did environmental allergy test #2 - and scheduled me in a few weeks to do food testing, for which I am supposed to "make a list of foods I think I might be allergic to." I didn't have to do this for environmental allergies because they have a list... don't they have the same for foods? I thought they're the ones supposed to be telling me. He even asked me, well if I wasn't there for the environmental testing, then why was I there? I felt like saying, gee, since I just now found out you don't do the main thing I came for, I really don't know.

He wrote down for me a very generalized list of my triggers (trees, but which trees? moulds, but which moulds?) and didn't even remember to put down cats, which is one of the huge ones. He doesn't strike me as very detail oriented and makes me wonder what else he'll miss. He also seemed set on which allergens he wanted to treat me for first - like a "trust me I'm the doctor" attitude. But if I'm going to be the one committing to years of shots and 30-minute waits, shouldn't I have some say in the matter? After all, I'm the one who knows which allergies are compromising my quality of life the most.

So now here I am, 8 months later and still no closer to insect sting testing than I was in November. I've been to many allergists as a kid in the States and I've never seen a system where you have to go to one allergist for environmental, a second for food, a third for insect stings, etc. - and worse, where no one knows which allergists do what... so that you can waste vast amounts of time, energy, gas, and provincial money getting shuffled around from one to the other without actually accomplishing anything. Finding an allergist who does insect stings has been like a search for the holy grail.

So at long last, here are my questions:

Is there something I'm doing wrong? Any suggestions?
Is this a typical experience with Appletree? With allergists in general? Is there someplace or someone else you recommend instead?
Anybody else have a similar experience with Dr. Algom?
And most importantly, where can I find an allergist who does insect stings?

Wow, when things go badly, they go very badly!
Where are you with a referral to Dr # 3? If you have a name, call the Dr and confirm that they do indeed test for stinging insects.
Do you have an auto injector? If you want to claim it on a drug plan, you'll nee a prescription.
I would recomend that you also request a referral to a respirologist for your asthma which you describe as severe. Your environmental allergies will have an impact on this as well.
Good luck. You are always welcome to visit the local support group
http://www.ottawaasg.com/OASG2006/modul ... page&pid=3

Sounds like some sloppy reception work. While allergists' offices get pretty swamped these days, the person booking should know when someone calls and asks specifically whether "their" allergist does, in fact, test for stings.

When you get in with allergist No. 3, ask why not everyone does sting testing. We'd be curious to hear. My suspicion is that the test serum is probably quite expensive, may have a short shelf life.

In better news, if it turns out you are still allergic, immunotherapy for stings has a high success rate:

Quote:

There is a bright spot: if you’re at risk of anaphylaxis, you may prove a suitable candidate for venom immunotherapy. These allergy shots can desensitize you to the allergen and reduce your risk, usually 20 to 60 per cent, down to 2 per cent, the same level as the general population. “Venom immunotherapy is 98 per cent effective,” says Vadas.

Re food and asking you to chart your own allergy suspicions. I know it seems an odd request, but it isn't. Allergy tests are famously imprecise. There is a high false positive rate with foods. Some people will test positive to foods that they can eat just fine, with no symptoms or reactions. (In that case, an allergist usually will advise a person to just continue eating.)

So allergists want you to keep a history of what you ate before seeing/feeling symptoms such as gastro-intestinal distress or hives or throat tightening. When you read labels, you notice similar ingredients and patterns to your eating/reactions. Because of the high rate of false positives, the allergist will test for foods that appear suspicious – and a positive skin-prick test combined with a history of symptoms after eating a certain food will lead to a diagnosis of allergy to it.

I'm a Canuck who has lived in both Canada and the U.S. I think this could have happened either place. While the systems certainly are different, this appears more a matter of bad communication on the part of people booking appts. Frustrating for sure. But here's wishing you much better luck with the next appt.

It sounds like you're saying this is an exceptional experience, though, so I'm encouraged by that.

Dr. #2 didn't give me a referral so I have to go back to the clinic and ask for one. I'll call #3's office to confirm first, for sure.

_Susan_ wrote:

Do you have an auto injector? If you want to claim it on a drug plan, you'll nee a prescription.

I just bought 2 Epipens (no drug plan). I found out Ontario recently changed it so you don't have to have a prescription. I did get a prescription before I knew that, but found that buying it over the counter was a bit cheaper. Anyone know if I can still claim them on my taxes, or should I return them and repurchase them through the prescription?

Hmm... now you've got me thinking about the "severe" label. My asthma was horribly out of control for most of my life (5-6 ER trips per year) and the doctors always called it "severe" so I'm just used to calling it that. I made a drastic diet change (went vegan) in 2001 and now it's well controlled - no ER trips since 2001. (YAY!!! ) So now that I think about it, "severe" isn't really accurate any more. Do you think I should still go to a respirologist, or is that just for uncontrolled asthma?

Sounds like some sloppy reception work. While allergists' offices get pretty swamped these days, the person booking should know when someone calls and asks specifically whether "their" allergist does, in fact, test for stings.

Thanks Gwen, I suspected as much. Maybe it's time for a strongly worded letter. It's too late for me but perhaps the next person won't have to go through that.

gwentheeditor wrote:

When you get in with allergist No. 3, ask why not everyone does sting testing. We'd be curious to hear. My suspicion is that the test serum is probably quite expensive, may have a short shelf life.

I definitely will. I'm curious myself.

gwentheeditor wrote:

In better news, if it turns out you are still allergic, immunotherapy for stings has a high success rate:

Quote:

There is a bright spot: if you’re at risk of anaphylaxis, you may prove a suitable candidate for venom immunotherapy. These allergy shots can desensitize you to the allergen and reduce your risk, usually 20 to 60 per cent, down to 2 per cent, the same level as the general population. “Venom immunotherapy is 98 per cent effective,” says Vadas.

Which means there's something else I should share here for others who might get referred to Dr. Algom. When I asked him about insect sting testing, he blew it off and said there's not much that can be done about those allergies anyway. I'd say 98% effectiveness means quite a bit can be done! Someone else on this forum said "do not go see Dr. Algom," and I can see why. See my first post in this thread for the rest.

gwentheeditor wrote:

Re food and asking you to chart your own allergy suspicions. I know it seems an odd request, but it isn't. Allergy tests are famously imprecise. There is a high false positive rate with foods...

I'm a Canuck who has lived in both Canada and the U.S. I think this could have happened either place. While the systems certainly are different, this appears more a matter of bad communication on the part of people booking appts. Frustrating for sure. But here's wishing you much better luck with the next appt.

Oh absolutely, I've had annoying mixups in the U.S. too. I hope no one takes what I said as a slam on our health care system. I haven't changed my mind and still think it's excellent. That's why I asked how typical these problems are with the Appletree clinic in particular and with allergists in general - it's because I doubt this is the usual way things are done here and suspect the problem lies either with the clinic itself or the particular allergists I'm dealing with. I also keep thinking that maybe my lack of familiarity with this system is somehow contributing to the problem - so I asked about this too because I can't help but wonder if I'm doing something wrong.

Thank you kindly for your insights and well wishes! I'm going to bypass the Monday rush and give it a go tomorrow.

Dr. Algom. When I asked him about insect sting testing, he blew it off and said there's not much that can be done about those allergies anyway.

Most likely meaning not much money to be had for him in offering allergy therapy!
Move on...move on...I hope you can find an Allergist who will work with you as part of your health team (you being an important amd respected member).

Most likely meaning not much money to be had for him in offering allergy therapy!

'Zackly!

_Susan_ wrote:

Move on...move on...I hope you can find an Allergist who will work with you as part of your health team (you being an important amd respected member).

Thank you - hope you've found the same for you and your daughter.

I called Dr. Frankish (allergist #3) and they do environmental, food and insect stings - but they aren't taking new patients until February. Bleh.

Then I went back in to the clinic. During my discussion with the medical assistant, I told her of the problems I've been having and she said "we just send out the referrals - after that the specialists handle it." Meaning that it's the allergists' staff who failed to inform anyone that they don't do what's being requested on the referral. Ta-da! An answer! I also got the distinct impression from her descriptions of dealing with specialists that they can be real prima donnas too.

I told the doctor about the mixups and he said the problem is the list they have only says "allergy testing" - so if the allergist is picky about which kinds s/he will do, it's not listed there. He suggested I call allergist #3 back and see if they were referring people elsewhere since their wait time is so long. I asked him, what if they're not? Can I just look through the phone book and start calling allergists until I find one that does insect stings? He said I can and gave me a referral without a Dr.'s name on it so I could take it to whomever I found. Yay!

So I made some calls and found allergist #4, Dr. Seema N. Khan, who does "venom testing" (that's what they called it) and can see me in August. Woohoo!! Thanks again to everyone here for your support.

My 18 year old was bitten by a bee or wasp on his wrist at day care when he was about 3 and his whole arm swelled up. I took him to my doctors and was told that he "probably has an allergy" and to "give him benedryl and get him to the hospital if he is ever bit again". No tests and no Epipen. I really had no clue about allergies back then so I didn't think it was a big deal. Fortunately he has never been bitten again but we still don't know if he has an allergy. With DS#2's allergies and ana reactions, it is making me more aware and I have been wondering if I should get DS#1 tested for venom stings. I keep meaning to ask Dr Ham Pong about it during DS#2's appointments but am usually so overwhelmeded and disappointmented in that's days results that I haven't thought to ask if he does that testing. I think I would need a referral anyway. I'm glad I read this though, it is a good reminder for me to call Dr Ham Pong's office and see if they do venom testing. Please keep up updated in your results.

My 18 year old was bitten by a bee or wasp on his wrist at day care when he was about 3 and his whole arm swelled up. I took him to my doctors and was told that he "probably has an allergy" and to "give him benedryl and get him to the hospital if he is ever bit again". No tests and no Epipen.

Yikes. I would urge you to get DS#1 a couple of Epipens ASAP while you are arranging for venom testing. His reaction to the first exposure may be moderate. But after that an allergic person builds up antibodies, and reactions to future exposures are more likely to be severe and/or anaphylactic. You probably know all this now from DS#2 but it's worth saying.

As some of us were discussing earlier, you don't need a prescription to get Epipens in Ontario (although you do if you need to bill them to a drug plan). They're expensive if you have to buy them out of pocket (I paid $100 each ) but they're worth the peace of mind to know he can do something about it if he gets stung again and has another reaction.

It can be overwhelming sometimes in the Dr.'s office, so I sit down the night before my appt and write down a list of questions for him/her so I won't forget to ask anything. If you are the forgetful type like me you can write it on 2 post-it notes and stick one to each DS's health card.

You'll likely need a referral for the venom testing, and when you get one, consider getting it with no Dr.'s name on it as I did. As you've seen from my ordeal above, many allergists who say they do "allergy testing" don't do venom testing; so I had to call around until I found one.

My 18 year old was bitten by a bee or wasp on his wrist at day care when he was about 3 and his whole arm swelled up. I took him to my doctors and was told that he "probably has an allergy" and to "give him benedryl and get him to the hospital if he is ever bit again". No tests and no Epipen.

Yikes. I would urge you to get DS#1 a couple of Epipens ASAP while you are arranging for venom testing. His reaction to the first exposure may be moderate. But after that an allergic person builds up antibodies, and reactions to future exposures are more likely to be severe and/or anaphylactic. You probably know all this now from DS#2 but it's worth saying.

As some of us were discussing earlier, you don't need a prescription to get Epipens in Ontario (although you do if you need to bill them to a drug plan). They're expensive if you have to buy them out of pocket (I paid $100 each ) but they're worth the peace of mind to know he can do something about it if he gets stung again and has another reaction.

Fortunately we do have a drug plan so I usually have about 5 epipens for DS#2 between home and the sitters. As for DS#1, I have an adult epipen for myself because of a past ana reaction, so I think I may just give him one of mine when he heads off to college, just for peace of mind until he can get tested. But will a doctor give a referral if we haven't seen any recent reactions? We only got a referral for DS#2 after he had a reaction.

As for DS#1, I have an adult epipen for myself because of a past ana reaction, so I think I may just give him one of mine when he heads off to college, just for peace of mind until he can get tested.

I was told by the family Dr. (and have read elsewhere from allergists) that each person should always have 2 Epipens because the first one doesn't always stop the reaction. So he prescribed 2 of them for me, for this reason. I may be telling you something you've already heard, but it's worth reiterating just in case you or other readers haven't.

Diana_ wrote:

But will a doctor give a referral if we haven't seen any recent reactions? We only got a referral for DS#2 after he had a reaction.

If s/he is reluctant to give a referral even after you describe his previous bad reaction, as a mother I would push. After all, we're potentially talking about a life or death situation for your son. You and he need to know what you're dealing with to keep him safe. Just because a reaction happened a long time ago doesn't necessarily mean he's in any less danger today. The only reason you haven't had a chance to see if he'll have another reaction is because he hasn't been stung again. Will he or won't he? It's not worth risking your son's life because his Dr. is hesitant to do what the other Dr.'s should have done for him 15 years ago.

I know it's not pleasant to hear, and I'm sorry for that, but I hope at least it's helpful.

I was told by the family Dr. (and have read elsewhere from allergists) that each person should always have 2 Epipens because the first one doesn't always stop the reaction. So he prescribed 2 of them for me, for this reason. I may be telling you something you've already heard, but it's worth reiterating just in case you or other readers haven't.

I'm beginning to think they prescribe two so thatthe counsellor/teacher/sitter has a second to fall back on after the stab the first in their own thumb! Earlier this week I ask a summer camp counsellor to show me with the trainer, how he'd use an Epi-Pen (he had been trained).

My 18 year old was bitten by a bee or wasp on his wrist at day care when he was about 3 and his whole arm swelled up. I took him to my doctors and was told that he "probably has an allergy" and to "give him benedryl and get him to the hospital if he is ever bit again". No tests and no Epipen. .

Your son may now be old enough to get the testing done. When my son was 8 I took him to an allergist -- I wanted him tested for insects. The doctor refused to do that test because he was to young for the immunotherapy shots, so why take the (minimal) risk of exposing him to insect venom. Also, a negative result would only mean he's not allergic to that specific venom -- with millions of insects, it's possible he might test negitve to all he's tested on and yet still be allergic to different ones. Also, a negative could mean it's his first exposure to that specific venom and so be a false-negative.

_________________self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings

My 18 year old was bitten by a bee or wasp on his wrist at day care when he was about 3 and his whole arm swelled up. I took him to my doctors and was told that he "probably has an allergy" and to "give him benedryl and get him to the hospital if he is ever bit again". No tests and no Epipen. .

Your son may now be old enough to get the testing done. When my son was 8 I took him to an allergist -- I wanted him tested for insects. The doctor refused to do that test because he was to young for the immunotherapy shots, so why take the (minimal) risk of exposing him to insect venom. Also, a negative result would only mean he's not allergic to that specific venom -- with millions of insects, it's possible he might test negitve to all he's tested on and yet still be allergic to different ones. Also, a negative could mean it's his first exposure to that specific venom and so be a false-negative.

So did your son ever get venom testing? Do you think it's not worth it to do venom testing? Is it just too unreliable?

I've never been stung by anything (except a honeybee one time, and I brushed it off so fast the stinger didn't even stick). You've got me wondering if I'm going to get all false-negatives because I've never been stung.

AnnaMarie wrote:

Someone asked whether an epi-pen purchased OTC can be claimed on taxes -- NO. You can only claim prescribed meds on income taxes.

Good to know, thank you so much! Luckily I kept the receipt and the boxes, and the pharmacy said if I bring them back they'll re-process the purchase through the prescription I got. It has to go through the pharmacy manager, but it can be done. Word to the wise.

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